At 36 years old with two small children I was diagnosed with Young Onset Parkinsons Disease. This is the account of my journey from onset to diagnosis and beyond.
I have two choices. I can sit and feel sorry for myself and get worse fast, or I can dust myself off and fight. I think l will choose the latter!
So bring it on Parkinsons, bring it on!

Oct 18, 2016

Brian Grant ~ Life with & Parenting with Parkinson's ~ A candid conversation between 2 Parkie's

I had the utmost pleasure to meet former 12 year NBA
player Brian Grant while at the World Parkinson Congress. On two occasions we had brief conversations
and photo’s taken.I was particularly
struck on the fact that despite his insane schedule that week with the
congress itself and media given it was happening in his home town, he never
rushed a conversation with someone with Parkinson’s that wanted to meet
him.He spoke on a couple of occasions and
participated in one of the panel sessions on living well with PD and he was
genuine, honest and very down to earth.I watched from afar on several occasions his willingness to oblige
handshakes and photo ops and he was attentive to each person that crossed his
path.I watched this with great
respect.In one of our brief conversations
I told him that he was very gracious to the countless people there
that wanted to meet him and that I thought that was extremely kind of him.He told me that when at other public events
if he’s tired or his tremors are bad or he’s not feeling great he has the
ability to simply leave.However that at
the WPC there was no way he could or would want to do that, he said he
respected the fact that people with PD wanted to meet him and speak to him and
he appreciated that they wanted to.He
said simply “how could I not take the time for them?”

When I was given the opportunity to “interview” Brian for
an article for my blog I was over the moon!There was no way I would refuse that once in a lifetime chance.We were originally set to meet in person at
the congress to have our conversation however things were hectic for him and I
told his assistant that I’d be quite happy to chat with him after the congress
was over and things settled down for him.I was exhausted so I could only imagine how he was feeling given his
schedule that week.And well, it’s
pretty cool to be able to say that Brian Grant has my phone number, I’ve told a
few people “Brian called the other day we had a great 20 minute chat” Ha!I’m considering us friends now, but at the
very least he’s incredible and an inspiration to the PD community, we are lucky
to have such spokes people to bring awareness to the disease, particularly that
it’s not only old people that get it like him and Michael J Fox.

To give you a brief background, Brian was diagnosed with
YOPD around 36 years of age, he had recently retired from his NBA career.It started with a slight wrist tremor while
still playing in the NBA where he joked in one of his speeches that upon asking
one of the team doctors about it and what it was they simply responded “old age”
as when you’re a professional athlete that’s considered old I suppose.Brian has 6 sons and 2 daughters and has been
married and divorced twice. Below you'll find the questions I posed to Brian.

How did your children handle your Parkinson’s Diagnosis?

My older boys 20’s & late teens handled it
alright.They started to dig into
finding out what Parkinson’s is and how will it affect Dad.When they ask me things I try and be honest
and answer as best I can.I tell them
about new meds and things that can help life be better with PD and about dyskinesia’s
and other side effects.They’re at the
age where if I say something like that they run to the internet to Google what dyskinesia
is.My now 13 & 14 year old
daughters were quite young.They’d ask ‘why
does your hand shake?’ and I’d tell them because I have Parkinson’s.When they’d ask what that was I’d simply say
it’s when your hand shakes.And at the
time they would simply associate PD with a hand tremor. I always try and be honest with all my kids
about it but at the same time I don’t want to scare them.

Do you think overall it’s important to involve your kids
in your PD journey?

For me it was important, I can’t really speak for you or
anyone else, but for me I found it to be very important because if I’m not
telling them what PD is they might go to the wrong web site or the wrong
friends.I want to give them my definition
of it and what that means for me, because otherwise they could go to their
friend who’s Grandpa has it and what it means to them might be something
totally different.I want to make sure
the information they get comes from me.

I even joke around with my daughter sometimes and I’ll
say ‘can you get me another sprite’, why can’t you get it Dad? ‘cause I have the
Parkinsons’.I try and laugh at myself
and allow others to laugh.It’s a
serious disease but as you know we have a chance to be around it’s not like
stage 4 cancer or ALS or something.

Did you get any advice on parenting with PD from anyone you
know with PD?

I didn’t get any advice specifically from Fox or Ali or
anyone, but who I do get information from is Soania Mathur, a GP in Canada has
a couple books out and anytime I have questions about the kids I always refer
to her. (Below you'll see a photo of myself and the lovely Soania www.designingacure.com/)

Do you think your Parkinson’s can enrich your children’s
lives in some way?

I think it can in some ways because for me up until I was
diagnosed I was like everyone else in the world, I was going to live forever,
always be healthy but once you’re diagnosed with a life changing disease like
Parkinson’s it changes your perspective, in fact it changed mine immediately.So I don’t want to put that burden on the
kids if they ask I’ll tell them but I’m not going to sit them down and talk
about specifics right now.Maybe someday
I will as I progress.They are involved
in the foundation I don’t make them go but they attend every event we’ve had
and they enjoy it, its fun.They’ve always
enjoyed participating in that stuff.My
older boys when they are home volunteer at any events and things we have.

What advice would you give to someone newly diagnosed
with Young Onset Parkinson’s?

I would tell them to take the time for themselves before
they try and help everyone else understand what’s going on with them.If you just get diagnosed other than your
partner, they need to know but as far as the kids and relatives and others come
out at your own pace.Unless there’s
questions being posed to you, like why do you look like that when you stare at me,
or why does your hand shake?Things that
aren’t normal to them and the doors open, then tell them.But I would advise everyone to do that at
their own pace and speed, to wait until you’re comfortable with it before you
let everyone else in.

And what advice would you give to someone who is a parent
and diagnosed?

The disease affects everyone so differently and we are
all in our own unique situation maybe you’re in a marriage or a single parent.The initial blow is so emotionally heavy, or
at least it was for me.I didn’t want to
deal with it right away, but then again I was going through a divorce and was
just retired there was so much going on in my life other than my
diagnosis.I will say this, once I was
able to explain to my kids what was going on with Dad I felt so much
better.It was like a big weight lifted
off my back, I didn’t care if anyone else in the world knew at that time they
were the ones that mattered.I was
focused on how it was going to make them feel, I didn’t want them to feel bad
or worry.And another thing I focused on
was I didn’t want to embarrass them.Sometimes when I’m at gamesand
stuff and I get surrounded by parents talking, I’m tremoring and stuff and in
my mind I feel like I’m embarrassing my kid when that couldn’t be further from
the truth.My biggest fear is embarrassing
my kids because if I saw that I was it would devastate me.

As you mentioned we are all very different and our
Parkinson’s symptoms are often unique.What are your biggest challenges as far as symptoms go?

The tremor definitely and my gait.I’m assuming I’m walking normal but it
definitely feels different when I’m walking.And then there’s depression, I’m on medication for that which has helped
tremendously.Anxiety, here I am a
public figure trying to be a champion for this disease and help defeat Parkinson’s
and then get this deep anxiety that makes it really hard to go out and speak to
people.I’m sure you understand this (which
I most certainly do) but it gets so bad.My mouth will get dry, my eyes will get dry, and I start to tremor its
crazy.

Do you think your career in the NBA can help you in
living your journey with Parkinson’s?

It absolutely helps me; more importantly given I’m a
retired professional athlete I know how to be in tune with my body where as
someone else with PD may not be.When
something starts to happen with me that isn’t normal I think that must be
Parkinson's.I know how to train which can be a
curse too, I know how hard it is I know before I even start to do it.Sometimes I’ll think to myself I don’t have
to do that, I don’t have to be in tip top shape.I don’t know how to just coast and how just a
little bit each day can be such a help, no no I’m full bore ahead.

I was watching an older interview you had done where you
discussed that you weren’t sure “they” wanted to find a cure for Parkinson’s
and other diseases given there’s so much profit in medications for our
disease.What are your thoughts on that
today?

I think a lot of people make those statements, I still
think everyone is trying to find a cure.It doesn’t benefit drug companies to find a cure pushing forward.I think they have their place within the
Parkinson’s community because without them a lot of foundations couldn’t get
their programming off the ground.Not to
mention we need their medications in order to survive and I’m thankful for
those medications and hopefully someday when there is a cure they are
instrumental in putting it out there.

What do you hope you can continue to achieve with the Brian Grant Foundation moving forward?

We’ve gone through some changes and they’ve been very good. Right now our programming we have is our wellness retreats and our boot camps and also our nutritonal cooking classes.Those are the things we are trying to roll out.Our goal or at least my goal is in the next 5-10 years to be able to roll these things out in other cities where we go through things and organizations in those cities can adopt them.That’s my dream!

We discussed anxiety and depression in a bit more depth
and in asking me if I experienced it I told him that I never had an anxious
bone in my body before, but now I suffer with what I refer to as social anxiety
and there are times it can be quite bad, cause me to withdraw and yet be lonely
at the same time.I told him that I find
it difficult to deal with the aspects of the disease that change your
personality, that change all the parts of you inside that you always knew
yourself to be.And he told me how he
feels the exact same way, that when he gets around a bunch of athletes or
friends he was always in tune to the moment and what had to be done or what he
was up to.And the thoughts of
depression or anxiety happening to him never occurred to him that it wasn’t that
he felt negatively towards people who had those issues but he just knew it
would never happen to him, until it did.And now he has to change the way he thinks about all those things
because there’s no surgery or treatment for these aspects of Parkinson’s
disease like there are for the motor symptoms.He explained how well depression medication works for him and made
a huge difference but nothing truly changes how our identities and what we’ve
always known to be ourselves being altered permanently.

We also discussed candidly Apathy and I told him how my
get up and go has gotten up and left and how it’s extremely difficult if not
impossible some days to get motivated to do something.That things I love I still procrastinate on
to the final hour and I was curious if he like many others had issues in this
area.He told me that he finds it very
hard to get motivated at times and he was often MIA in his own life space.He spoke of how he always put his hand in
his pocket or sat on his hands and all the things many of us do to hide our
tremors and that a point in time hit when he told himself he wasn’t going to do
it anymore that he didn’t care what people thought, but clearly he did and
still does.So sometimes it’s hard to
get out there and be motivated when you want to do something when in the back
of your mind you’re struggling with other things too.

Our conversation ended with him asking me how long I have
been living with Parkinson’s and a bit about my life which I thought was so
kind of him.I got the feeling that like
myself this wasn’t an “interview” like thousands he had done before.This was two people living with Young Onset
Parkinson’s Disease, two parents trying their best to be the best they can be
for their kids; two ‘young-ish’ people fighting a disease for a very long time
to come that were simply having a conversation about life with Parkinson’s.Or at least that’s certainly how he made me
feel and it was pretty awesome.We
talked about how we are lucky, I believe we share the same opinion on that and
that yes we have PD but it could always be worse.He truly is an amazing man and a wonderful
advocate and spokesperson for the Parkinson’s community and I’m very grateful
to have had the pleasure of meeting him, speaking with him a couple of times at
the World Parkinson Congress and having this lengthy conversation over the
phone with him.We ended our call with
him thanking me for following his foundation and for writing a blog and told me
to keep doing what I’m doing.And that
nearly brought me to tears hearing it from him.How incredible and gracious is he?

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About Me

My name is Natasha McCarthy and I am mother of two beautiful little girls, Samantha & Izabella. Living in tiny little Prince Edward Island with my amazing husband Aaron, who works on the opposite end of the country for sometimes months at a time.
I went from feeling healthy, strong and working out like crazy... To shaking, pain, being slouched over and difficulty with simple tasks. It felt like my body was falling apart but I didn't know why. So this is an account of my journey to finding answers to what I knew was a big problem. To being my own health advocate and not giving up. Because I am a Mom & Wife first and I will be the best I can be for my daughters & husband. I will explore every option, every avenue and fight like never before!
Feel free to contact me, I'd love to hear from you! Check out my FB Page at: www.facebook.com/BrokenBodysJourney